Lucienne is the parent of a teenager with Down syndrome, when he was born she was given a booklet which mentioned life expectancy, an increased risk of dementia and leukaemia, and was terrified! Subsequently she set up a local Down syndrome support group to prevent new and prospective parents getting miss information about Down syndrome, to support families at the point of diagnosis and beyond. She is the Healthcare Training Manager Positive About Down Syndrome (PADS) and is also a founding officer for the National Down Syndrome Policy Group who is supporting the government in the implementation of the Down Syndrome Act 2022 in England.
PADS is the maternity initiative from the parent lead national charity Down Syndrome UK that supports families from the early stages of their maternity journey to preschool and beyond. Many women experience a lack of information and positivity surrounding the discovery their child has Down syndrome. PADS works closely with maternity units, hospitals and universities providing contemporary literature and training to ensure that expectant and new parents are not subjected negative and outdated stereotypes and they are fully supported in all aspects of having a young child with Down syndrome.
Our Lived Experience training includes the parental perspective of receiving the news baby has or may have Down syndrome, the importance of language used around screening and diagnosis, examples of best practice and the reality of having Down syndrome in the 21st Century. Receiving news that your baby has Down syndrome should not be a negative experience; there is lots to be positive about.
